Posts Tagged ‘children with disability’

Nearly Cancelled… Seriously

 


As Chloe’s surgery drew closer and closer, we all became more and more anxious about the process and the results. Chloe was feeling the stress. I was feeling the stress. Paul was feeling the stress. The boys were feeling the stress — but showing it and feeling it in completely unique ways.

Would the pain be too much?

Have we made the right decision?

Should we really be opting for this surgery for our girl?

Would there be complications?

A few days before surgery, Chloe came down with a cold or allergies or something. I thought maybe that was going to be our ticket off this scary train we were on. But the doctors still okayed her to have the surgery.

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Anxiety became stress. Stress became fear. Fear became panic. This was a really big deal, and it was scary.

A few days before the surgery, at the doctor’s recommendation, I talked to a local mom whose son had a very similar surgery by the same surgeon. Hearing her talk about their experiences scared me to death. She was as nice as can be, and she was glad they had done the surgery. But her son’s story was filled with some complications and difficulties that just about scared me off.

I found a couple of blogs of parents of kids who had similar surgeries. The talk was the same: the first 3 days are absolutely terrible, unbearable. The rehab time is brutal.

This mama wanted to turn around and run. And run fast and far. I was filled with doubts and fears and began to panic.

Then, 2 days before surgery, Zippy’s asthma flared up. It was the worst his asthma has been in about 10 years. As the ambulance transported him downtown, I told myself that if he was admitted then I was calling the surgery off. It would be my sign. It would be my sign that the surgery wasn’t supposed to happen.

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He was admitted for his asthma.  The ER doctors gave him tons of medicine, but his asthma was not responding to treatment. They put him on oxygen and even mentioned intubating him. And then they admitted him. Two days before surgery. In the same hospital where Chloe would have her surgery.

Was this it, then? Should I call and cancel the surgery?

Paul was shocked that I was even considering canceling. (But he hadn’t talked to that mama I had talked to! He hadn’t heard the stories!) He didn’t agree that Zippy’s being admitted should be my sign. He argued we should continue with surgery as planned because it would be a nightmare to re-think the timing of a different date. (And he was right. But it was hard to separate my fears at this point.)

So I reluctantly agreed to pack for the hospital after Zippy was discharged from the hospital….

The day before surgery, Mother’s Day, I was an emotional wreck. I cried hard several times. And I’m not a cryer. It hurt down deep thinking about what my girl was about to endure. It hurt my heart knowing that while Chloe understood the process pretty well and wanted to do it, the reality was she probably had no idea of the level of pain she was going to experience. I cried big and hard several times. I was terrified.

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I kept going into Chloe’s room and looking at her beautiful legs. Her perfectly imperfect legs. I rubbed them and photographed them and kissed them and stared at them. After tomorrow, they would be forever different. This was the last day I would ever see those legs…. I was seriously a wreck.

But the day of surgery, I was back in my brave mama mode. I was up and ready and set for what was before us…for what was before my girl. My emotions were definitely right on the surface and could’ve burst forth at any moment for most of the day, but for the most part I was set and ready. Once while waiting for the doctor to come for surgery, I caught a glimpse  of her little skinny knees and nearly lost it. But I quickly pulled it together.

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Then the doctor came, we said, “See ya later,” and “I love you,” to Chloe, and they wheeled that precious gift with those skinny little stuck knees right out of the room and down the hall to surgery.

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Yeah. It was a biggie. And we felt it.

Never Give Up

My girl is persistent. Thankfully.

She tries to tell me things. I nearly always know what she’s saying. But now and then, I just miss it.

Sometimes she gives me more than one chance to get her message. Other times, if I miss it, then too bad so sad for me.

Chloe, age 12 (and a half!), is mostly nonverbal. But she is quite a communicator. She gets her point across usually — especially if you’re “listening.”

Recently Chloe tried to tell me something for about 7 days in a row. Each time, I responded in a way that was NOT satisfying to her. But she was determined for me to understand…because she would greatly benefit from my understanding.

You see, Chloe has a love affair with stuffed dogs, especially dogs that have batteries and make noise. She owns a half dozen varieties of the My Pal Scout dog. She loves them and often gets them all going at one time, making them say their  phrases together in unison. She also often googles “My Pal Scout” on YouTube and watches reviews of Scout and his female counterpart, Violet (of whom she also has several varieties).

For days, Chloe would squeeze the belly of her My Pal Scout and vocalize to get my attention. Each time I responded with, “Scout’s belly doesn’t do anything. You just push his 2 hands and his 2 feet.”

And each time she would squeeze his belly again, not satisfied with my answer.

Then she would try again later that day or the next day. Each time I answered that Scout’s belly isn’t a button.

The day that Chloe said she wanted to go shopping with 2 of her cousins and me, I knew she had something up her sleeve because she is not one to volunteer to run errands. She much prefers the privacy of her own bedroom to going out and about. She grabbed her Scout as we headed out to the car.

Once in the car, she vocalized to get my attention and proceeded to squeeze Scout’s belly. I responded with my usual, “Scout’s belly doesn’t do anything. You have to squeeze his hands or his feet.” This time I added, “Some toys have bellies that you squeeze, but Scout just has his hands and his feet.”

Chloe then made a heart sign over her own belly and looked at me expectantly. This caused me to focus in a little harder.

“Is there a Scout with a heart?” I asked.

“Yes,” she nodded.

It was then I realized that Chloe must have seen a later-version of Scout on a YouTube toy review that has a belly that you push. Or maybe a heart that lights up or something. “And you want to buy it at the store?” I asked her.

“Yes,” she nodded again, surely relieved that her mama was finally catching on.

“And THAT’s why you wanted to come shopping with us?” I smiled at her.

“Yes,” she nodded triumphantly.

I was glad I had figured out what she had been saying, but I doubted the accuracy of our communication. The parts I had understood were a belly to push and a heart, but LeapFrog wouldn’t put hearts on the belly of a dog. Maybe you push the belly and the heart lights up or something?? I wasn’t sure. But she had clearly placed the heart sign on her own belly. She was probably not paying attention to what she was doing.

A bit later, we arrived at the LeapFrog aisle of Toys ‘R Us and lo and behold right there front and center was a Scout dog with hearts on his belly. She grabbed Scout and pressed his belly. He immediately sang a happy song in response.

A very happy Chloe held Scout tight as we made our way to the front of the store to check out. She had seen this very Scout on YouTube and had very clearly shown me that he had a belly that you push and that belly had hearts on it!

And now a happy girl owned it!

In case you ever wonder, just know that persistence pays off. As does patience. As does shopping with the girls every now and then.

Welcome to the family, New Scout!

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